My parents were unusual nursing-home patients. It was uncommon enough that they moved into their facility at the same time, after both had falls in the apartment where they had lived and then lay on the floor for nearly a day until they were discovered. It was similarly uncommon that they shared a room in the residence, where patients of different genders, even couples, are typically separated. That suggestion for separate rooms was in fact made to them, but they would have none of it.
My parents suffered from debilitating ailments — including vascular dementia (in the case of my mother) and advanced Parkinson's disease (my father) — and were in no position to continue their sex life in the nursing home, where she passed away seven years ago, and he earlier this year. But given the building's open-door policy (that is, the doors always stay open) and lack of privacy (staff never had to knock on those open doors), they may not have been able to maintain intimacy there in any case.
And it is that commonplace denial of a sexual life to nursing-home residents, whether singles or spouses, which may now be emerging as a human-rights cause, following the release of a persuasive paper by a team of Australian researchers in the Journal of Medical Ethics, "Dementia, Sexuality and Consent in Residential Aged Care Facilities." As the report states:
There is no law barring sexual relations between nursing home patients. Yet at many facilities administrators establish barriers to contact that the report's lead author, Dr. Laura Tarzia of the Australian Centre for Evidence Based Age Care, believes violates the residents' dignity.
Tarzia and her colleagues are working to create protocols to help residential facility staff members determine if and when they should discourage or stop sexual activity, such as when it is not consensual. But in general, as Tarzia's team wrote, "Persons with dementia have lived with their sexuality for much longer than they have lived with dementia," and so "it should not be up to the individuals with dementia to prove that they have the capacity to decide whether or not to engage in sexual behavior, but, rather, the onus is on staff to prove incontrovertibly that they do not."
Beyond recognizing residents' right to a sex life, Tarzia argues, both staff and families need to make sure couples are practicing safe sex. A series of recent reports have drawn attention to a sharp increase in reports of sexually transmitted diseases among older Americans. For example, based on Orlando Sentinel analysis of federal Centers for Disease Control and Prevention data, "the number of reported cases of syphilis and chlamydia among those 55 and older increased 43 percent" from 2005 to 2009. Other research has found similar increases in STD rates among nursing-home residents. The cause is unclear. Among the theories put forth by experts are residents' generally weakened immune systems, a lack of access to condoms in facilities, and a shortage of education among the oldest residents about the risks of STDs.
For the spouses and children of nursing-home residents with dementia, intramural romance can be an extremely uncomfortable subject. Many are not as enlightened as former Supreme Court Justice Sandra Day O'Connor, who famously gave her blessing to the romantic relationships that her late husband struck up in the Phoenix residence for Alzheimer's patients where he spent his final years. "It was nice for him to have someone there who was sometimes holding his hand and to keep him company," O'Connor told The New York Times in 2007.
While many residents have relinquished power of attorney to a spouse or child, that should not mean that they've surrendered decisions on their own sexuality as well, Tarzia maintains. "Sexuality shouldn't be categorized as a high-stakes decision, like, say, a will or a major financial decision," Tarzia told NPR. "We're saying that sexuality is different and the way to establish consent should be different."
In the near future, we may look back on Tarzia's paper as a turning point in our perceptions of seniors and sexuality. There are 5.5 million Americans living with Alzheimer's today, and that number is expected to triple by 2050, according to federal projections. Those patients will include our spouses, our siblings and ourselves.
"We need to normalize the idea that older people are human beings," gerontologist Bill Thomas, who has founded two movements that aim to reshape nursing-home care, including the Green House Project, told NPR. "They have the same needs and same desires they had before. Age changes those needs and desires, but they are still there. As we become an older society, this is something that we need to learn to better address."
My parents spent their married lives in separate beds, but on occasional Sunday mornings, one of my siblings or I would wake to find them cuddled together in my mother's bed. That was not to be their nursing home experience, but if it had been their desire, I would not have wanted the staff to deny them the privilege. And it should not be difficult for any of us to picture ourselves in the same situation. If we want the right to continue to express ourselves sexually, even when little else works well, now may be the time to speak up.